Bainbridge Island Review

AS TOUGH AS THEY COME: BHS student runs triathlon to raise awareness of Ankylosing Spondylitis

Sallie Marx, a senior at Bainbridge High, runs to the finish line of her first triathlon. She ran in the race to raise awareness of Ankylosing Spondylitis, a disease she has had since the age of 13. / Photo courtesy of Josh Marx

11.11.11.

Sallie Marx will never forget that date, and the fear that nothing notable would happen.

It would be just another day.

11.11.11.

“I remember the night before I was thinking ... it’s one day that only happens once: 11.11.11. I remember thinking, too bad I won’t have a memorable day, because it’s just another doctor’s appointment,” said Marx, a senior at Bainbridge High School.

It wasn’t. It turned out to be the day Marx finally got an answer.

Since the seventh grade, Marx had suffered from unexplained pain and stiffness. Sometimes it got so bad she wasn’t able to walk much.

“I was in and out of hospitals and doctors’ appointments, trying to find treatments,” she recalled.

Physician after physician struggled to explain why the 13-year-old was in so much pain.

Some figured it was her active sports lifestyle, but Marx said the pain was much different than what she would experience after a brutal basketball, soccer or lacrosse game.

“I would wake up and I would have trouble moving my legs, because my back and hamstring muscles would be really sensitive,” she recalled. “I would try to take Advil, but it would never really go away.”

The doctors’ visits and hospital trips continued.

“Ultimately, when they couldn’t figure it out, they said the pain is in your head and if you try to get out of this cycle of pain, you’ll teach yourself that it’s not actually real,” Marx recalled.

“In the back of my mind, I knew there was something wrong, because they wouldn’t go away, even with everything we tried. I knew it was real,” she said.

Then, two years ago on that November day, her doctors found the answer. She had Ankylosing Spondylitis, a chronic disease that causes inflammatory arthritis.

Starting this summer, Marx has made it her mission to spread awareness of Ankylosing Spondylitis.

Marx noted that the disease has no cure, and roughly 1.1 million adults and adolescents have been diagnosed with AS. AS causes decreased mobility and possible fusion of the spine as the disease progresses.

She’s made it her senior project at Bainbridge High, and the culminating event was raising money for the Spondylitis Association of America while training — and then competing in — a Half Ironman Triathlon.

The Ironman competition was quite a challenge to set for herself. Her parents, Josh and Stacey Marx, were a bit worried, but the teenager wore them down with the idea.

To get ready for the Ironman competition — which was held at the end of October in Austin, Texas — she competed in a sprint triathlon and an Olympic triathlon in August.

“Before I decided that this is what I wanted to do for my project, I had never really been a swimmer — besides not drowning.”

Those who know Marx aren’t surprised at her goal of competing in a half Ironman, a grueling three-pronged event that features a 1.2-mile swim, followed by a 56-mile bike ride and a 13.1-mile run.

Tami Tommila has been Marx’s coach on the Bainbridge varsity lacrosse team since she was a sophomore.

“She has an incredible work ethic. She’s one of the hardest working kids I’ve ever coached,” Tommila said.

“With her physical disability, it’s even more unbelievable that she does what she does,” she said.

Tommila said Marx is a natural leader, extremely intelligent and well-liked by her teammates and classmates.

“She’s very funny; she’s got a great sense of humor. I think she could be a professional poker player,” the coach added. “She has a great poker face.”

When she heard Marx had planned to compete in an Ironman competition to raise awareness for AS, it didn’t come as a shock, she said.

“If anyone is going to do something like that, Sallie Marx is going to do it,” Tommila said.

Her family said she’s always been a go-getter, with a million things on her plate.

She’s always been a giver, too, a person who looks beyond herself.

Marx ran in a Race for the Cure when she was 13 in Spokane and raised $5,000.

Marx has always been “super strong” and athletic, her family said, never much into the People Magazine, high heels kind of thing. She started reading the sports pages when she was little, and plastered her bedroom walls with Sports Illustrated covers as a teenager.

“She’s an amazing person,” said Kim Kooistra, an English teacher at Bainbridge High who had Marx as a student in the 10th grade.

She said Marx was the most mature student she’s taught during her 12 years at the front of the class.

“She really wants to learn. She values knowledge,” Kooistra said.

“She is like the complete Renaissance student who works hard; in her team lacrosse, earned honors in English,” Kooistra said. “All the students look up to her. She just exudes this leadership which, I think, it’s rare.”

She recalled an assignment in her 10th-grade class that looked at heroes.

Another student picked Marx to profile. Back then, Marx had decided that any money she would get from her bar mitzvah, she would give to charity.

“I’ve never had a student recognize another student for this project,” Kooistra said.

Then again, Marx is something special.

“She is just incredibly generous. She takes the time to thank people,” Kooistra said. “A lot of teenagers, they just don’t think about that; they are not at that point where they are reflective.”

Through her fundraising effort this year, Marx has raised $18,300 to help find a cure for AS.

And after 6:46 hours of racing during the triathlon in Texas, she finished the 70.3-mile course — the youngest of the 2,400 racers in the event and under her 7-hour goal.

“It was a long day, but it went by pretty fast,” she said.

There were a few rough spots along the way, Marx said.

But, no surprise to those who know her, she handled them.

“I got kicked in the face once pretty hard,” she said matter-of-factly. “After mile 11, I was hurting.”

“Once I finished, it was a relief. But it was also pretty rewarding. It had been a long journey since I started training and it was a journey since I was diagnosed,” she said.